GI and School

GI Appointment

We had Kylee's GI appointment on Friday and all went well. In fact it was the best GI appointment we ever had. For once we didn't complain about #2 diapers and throwing up. We really think the medicine we give her every month has taken care of that. So we are now going to try to bring her down on it as she does have lots of #2 diapers when she is on it. We also talked about starting to feed her in her stomach and he was ok with that. He said whatever mom wants to do (he is a smart man). So we are going to come up with a plan to feed her quick feeds in her stomach during the day and then a slow drip into her intestine at night. Hope it works. He is also bringing her down on her calories again. She has gained another pound (30.7 pounds now) in just a few weeks. So she is going down to 27 ounces a day and the rest is water and the last thing on this list is she needs a bigger feeding tube as she has outgrown the size we have been using.

School

I went and sat in on school for Kylee on Monday and it was great. She does so well. On Mondays she has a very busy day...gym...occupational therapy...physical therapy and if time allows speech. They do so many fun things with her during therapy. They have a little scooter they rider her around on in the hallway and she has several older friends. When they see Kylee in the hallway on her scooter they come out to say hi. She also has a new "boyfriend" at school. Her last one had to move to the afternoon class and now she has a new one. I got a picture sent home on Friday of the two of them hugging. It was the cutest picture every. I guess he is always worried about where Kylee is and like to be by her. She also has another friend named Zoe. They ride the bus together and often have vision therapy together. Kylee has really grown to like her and will smile when I say her name. I just can't believe how far she has come at school. We have decided to send her to summer school and she will receive therapy at our local hospital as that is where her therapist at school are from. We are trying to keep things on a regular schedule as so she doesn't fall out of the routine.

Surgery

Kylee is having her surgery on Wednesday to have new tubes put in her ears (her 3rd pair) and her adenoids removed. We have called to the Ronald McDonald house to get on the list for Tuesday night so we won't have to leave so early on Wednesday morning. Please keep us in your thoughts and prayers on Wednesday. The surgery is minor but as we have learned in the last couple of weeks from another 1P36 family is that even when you take a child in for something minor it can have a horrible outcome. They had taken there daughter in to have her feeding tube replaced and ended up having to have stomach surgery, ventilator and helicopter ride. Scary.

The Giggles

Kylee had the giggles on Friday and it was so darn cute. When we were going to Green Bay to her GI appointment she would laugh every time we went over a bump. Then when we were about half way there she just started laughing about every little thing and she was laughing so hard she started to snort. It was so darn funny. Then she started to laugh Friday night every time I would say the word serious. She is a goofy girl but I love it. Days like that are priceless.